16 yr old boy/just diagnosed

[KTas]

Hey everyone,
My son was recently diagnosed with moderate to severe Crohn’s. What a stressful few months It started with stomach aches, then weight loss, then throwing up. He constantly felt the need to go to the bathroom. Luckily no diarrhea. After CT, endoscopy/colonoscopy, a week in the hospital, and an MRI, we got the official diagnosis. No strictures, but bleeding ulcers and inflammation with almost a foot of colon affected

He is on prednisone and his first Remicade infusion was on Tuesday. He’s been drinking 6 cans of Ensure Plus daily. No solids...which has been a challenge. I ended up giving him a tbsp of soft rice upon his insistence, but am afraid of issues now.
He’s currently at 91 lbs...I’m hoping that we will see weight gain soon because that might help encourage him. He is feeling somewhat better. No throw ups, but maybe stomach aches and fullness. I have some questions and hope someone can provide answers:
1. He was a little constipated and it took 3 days for a BM. He’s usually been pretty regular. Is this a effect of medication?
2. He’s been having nose bleeds...never happened before. Also medication side effect?
3. How soon might we see weight gain? I know it’s only been a week of remicade, but how will he gain while only on these ensure shakes?
4. Three days after his remicade infusion, he had body aches, a terrible headache, fatigue, and stomach pain. It went away after 48 hrs. I’m assuming this is a side effect.
Anyways, I’m grateful for this group and thanks for the support

 

[my little penguin]

Sorry you have to deal with this
My son is 17.
He was dx with crohns at age 7
So 10 years now .

ensure plus is exclusive enteral formula (een)
It is used instead of steriods to help heal the gut while waiting for remicade to kick in as a maintenance med.
Remicade takes minimum of 6 weeks to work (3 infusions ).
Een works best if you don’t consume any solid food
So while it may seem innocent enough
Rice or any other solids are not permitted when using een to heal the gut .
Crohns takes months to heal
So weight gain won’t be for a few months once off een and using ensure as a supplement with solid food
Inflammation takes a lot of calories so extra shakes help with weight gain .

children’s hospital of Philadelphia uses 90% formula (ensure ) plus 10% solid food for maintenance of mild crohns ....
Which works in a few kids but not many

To help with hunger done kids do need additional shakes so maybe 7 or 8 a day ???
Crushed ice to chew helps
Crushed ice with table sugar sprinkled over it
Cotton candy machine (target sells small ones ) - use dum dumdifferent flavors crushed to make cotton candy

it is tough to do een
We let Ds avoid the table during dinner
(He did een over thanksgiving at age 7)

liquid In means less waste out so it can take time
Also ct /scopes clean everything out so that has to take three days to build up first

Remicade doesn’t have side effects of headache /belly pain
They may have given iv solumedrol (steriods during the remicade infusion) which lasts about two days of good but then the body goes through steriod withdrawal for some (Ds ) and that lasts about two days with body aches ,headaches, belly pain etc..,


hope your kiddo feels better soon
And remicade kicks in

you can let him know gained weight quickly after he finally healed
Ds is now 158 lbs .. but he still drinks two carnation instant breakfast a day to keep up his weight

the first two years are tough learning curve for all involved.
teenagers are trickier
Good luck

 

[KTas]

Thank you so much for responding. He’s on steroids as well as EEN. He’ll be on steroids for a month...I wonder why Dr. put him on both. Will ask.

Sorry you have to deal with this
My son is 17.
He was dx with crohns at age 7
So 10 years now .

ensure plus is exclusive enteral formula (een)
It is used instead of steriods to help heal the gut while waiting for remicade to kick in as a maintenance med.
Remicade takes minimum of 6 weeks to work (3 infusions ).
Een works best if you don’t consume any solid food
So while it may seem innocent enough
Rice or any other solids are not permitted when using een to heal the gut .
Crohns takes months to heal
So weight gain won’t be for a few months once off een and using ensure as a supplement with solid food
Inflammation takes a lot of calories so extra shakes help with weight gain .

children’s hospital of Philadelphia uses 90% formula (ensure ) plus 10% solid food for maintenance of mild crohns ....
Which works in a few kids but not many

To help with hunger done kids do need additional shakes so maybe 7 or 8 a day ???
Crushed ice to chew helps
Crushed ice with table sugar sprinkled over it
Cotton candy machine (target sells small ones ) - use dum dumdifferent flavors crushed to make cotton candy

it is tough to do een
We let Ds avoid the table during dinner
(He did een over thanksgiving at age 7)

liquid In means less waste out so it can take time
Also ct /scopes clean everything out so that has to take three days to build up first

Remicade doesn’t have side effects of headache /belly pain
They may have given iv solumedrol (steriods during the remicade infusion) which lasts about two days of good but then the body goes through steriod withdrawal for some (Ds ) and that lasts about two days with body aches ,headaches, belly pain etc..,


hope your kiddo feels better soon
And remicade kicks in

you can let him know gained weight quickly after he finally healed
Ds is now 158 lbs .. but he still drinks two carnation instant breakfast a day to keep up his weight

the first two years are tough learning curve for all involved.
teenagers are trickier
Good luck

 

[my little penguin]

They would use both since he is underweight and has moderate to severe crohns
Een has no side effects and can help a lot with mucosal healing which can allow weight gain
If he is on both
He may gain weight sooner
That’s a good thing
We bribed Ds to do een
Because reality is it’s very very hard
Not to eat
He got a reward at the end of each week completed
He did een for 9 weeks the first time abd has had to do brief bits of een a few more times afterwards over the years

 

[KTas]

oh I see...thank you. I hope your son is doing well now.

 

[my little penguin]

Ds has had stable mild crohns for years.
He is currently on methotrexate (mtx) and Stelara for crohns and juvenile arthritis
The combo finally got his arthritis under control which was a little more stubborn to get into a good place .

 

[Lady Organic]

Hi and welcome. I am sorry for your son's new diagnosis and issues.
I looked at the recommandations for dietary intakes for teenage boys and I see 2,600 to 2800 calories/day.
https://www.healthychildren.org/Eng...tion/Pages/A-Teenagers-Nutritional-Needs.aspxIf the Ensure Plus 235 ml bottle has a total of 355 calories that would mean 7.5 bottles/day for full nutrition of a teenage boy.
Was the 6 bottles the recommendation of the nutritionnist or GI? If the bottles are 235 ml, it may not be enough.
Complete Ensure diet can help bring remission faster along with Prednisone. Really no worries if your son ate a spoon of rice
Such a major change in diet could explain why is bowels took 3 days for a BM.

 

[my little penguin]

@Lady Organic her Ds is only 91 lbs
Which might be why the lower calories...at first

Most teenage boys weigh a lot more - my kiddo is in the skinny side at 158 but definitely requires 2600-3000 Calories

@KTas are there plans to increase his calorie intake ??
Sometimes the “plus” shakes are harder to drink and harder to digest since the my contain 1.5 calories
Vs regular which means more shakes but easier to digest

other kiddos with crohns require semi elemental formula (ensure is polymeric )

just something to keep in mind if the shakes don’t agree with him or he has issues with ensure

 

[KTas]

@Lady Organic and @my little penguin ...I am also confused. His GI Dr. and nutritionist both recommended 6 cans to begin with. They gave us a choice bt. Ensure and Kate Farms, etc. but he preferred the Ensure taste. They said any of these shakes work.
My son is 5’6”...perhaps that had something to do with it? I think he’s getting hungrier as days go by. Maybe that’s why he’s getting headaches and stomach aches. Who knows! It’s a guessing game right now. He most likely will have 7 cans today since he’s already done with the 6th.
Hopefully his height will increase also over the next year, but that’s the least of my concerns right how.

Hi and welcome. I am sorry for your son's new diagnosis and issues.
I looked at the recommandations for dietary intakes for teenage boys and I see 2,600 to 2800 calories/day.
https://www.healthychildren.org/Eng...tion/Pages/A-Teenagers-Nutritional-Needs.aspxIf the Ensure Plus 235 ml bottle has a total of 355 calories that would mean 7.5 bottles/day for full nutrition of a teenage boy.
Was the 6 bottles the recommendation of the nutritionnist or GI? If the bottles are 235 ml, it may not be enough.
Complete Ensure diet can help bring remission faster along with Prednisone. Really no worries if your son ate a spoon of rice
Such a major change in diet could explain why is bowels took 3 days for a BM.

 

[Tesscorm]

My son was diagnosed at 16 years also, he's now 26 and has been in remission for years.

He has never used steroids but EEN was used to induce remission. He went 6 weeks with no food. The treatment helped him a lot!! But, although he had lost approx. 25 lbs prior to dx, he didn't gain tons during the 6 weeks of EEN (I believe 6-10 lbs) but the weight started to come back quickly after the six weeks. At this point, he'd continued with partial EN plus his regular diet (starting with a reintro diet).

While on the six weeks of EEN, he was taking in 3000 cal/day. At that time, he was 5'10" and 120 lbs.

It is hard to have no food! He was allowed to have clear fluids along with his shake - he would often have a bowl of broth (chicken, beef, veg, a mix of two) and it 'tasted' like real food. He was also allowed jello, freezies, popsicles (no chocolate), etc. But it was the broth that was the most satisfying, even if it didn't take away hunger. He would take broth in a thermos to school so he could eat lunch with his friends and I arranged for the school to keep freezies for him as well.

He's been on remicade for years now and his crohns has been under control. Getting into remission through EEN and remicade has allowed him to finish high school, finish university, travel with friends, begin his career, date, etc.

Good luck!!

 

[Maya142]

My daughter has also been on EEN as well as 85% formula/15% food. She found it much easier when she was allowed some food. She was extremely underweight when we started her on formula. She had trouble drinking enough, so ended up with a feeding tube. She had been very nervous about the tube, and the first few days were difficult. But within a week, she was used to it and said it was WAY better than drinking formula. she had been on semi-elemental formula (more broken down than Ensure, so easier to digest) and it did not taste good. Compared to it, Ensure was like having a milkshake or dessert, but it didn't work for her (caused diarrhea and nausea). Some kids with Crohn's need more broken down formula because an inflamed gut can make digesting regular food or even Ensure harder.

Anyway, when she was severely underweight - 80 lbs and 5'2 - it took a surprising number of calories for her to gain weight. The dietician initially said 2000 calories but she did not gain on that. We upped to 2400 calories and then over time, she started gaining. It did take a while.

This summer she had to be on EEN - no food at all - due to another gastrointestinal issue (motility related) and it was SO hard. She was on just formula for 16 weeks. She was allowed broth but nothing else really. Distraction during meal times helped and we tried to cook outside on the grill as much as possible, so the house did not smell of food. It was still very hard. It might be worth asking his GI if he can do 90% EN and 10% food - a little food makes EN more tolerable, though it is still hard.

I would tell his GI about the headache and stomach aches. It is very possible he needs more calories. The stomach pain could be IBD related obviously and that will hopefully go away once he's had a few more infusions. My daughter saw some improvement after two infusions of Remicade, but didn't feel good till she had 4 infusions, I think. We also needed to up the dose of Remicade before she responded. And we increased the frequency to every 4-5 weeks, once maintenance doses started (after the first 3 infusions and loading dose). Scopes about 8-9 months later showed a perfect colon - no ulcers or inflammation. She did still have miild inflammation in her small bowel, but it was much better than the scope at diagnosis.

Hang in there. My daughter was diagnosed with Crohn's at 16 too, 7 (almost 8) years ago.

 

[KTas]

Thank you so much for telling me your daughter’s story. It gave me hope!

My daughter has also been on EEN as well as 85% formula/15% food. She found it much easier when she was allowed some food. She was extremely underweight when we started her on formula. She had trouble drinking enough, so ended up with a feeding tube. She had been very nervous about the tube, and the first few days were difficult. But within a week, she was used to it and said it was WAY better than drinking formula. she had been on semi-elemental formula (more broken down than Ensure, so easier to digest) and it did not taste good. Compared to it, Ensure was like having a milkshake or dessert, but it didn't work for her (caused diarrhea and nausea). Some kids with Crohn's need more broken down formula because an inflamed gut can make digesting regular food or even Ensure harder.

Anyway, when she was severely underweight - 80 lbs and 5'2 - it took a surprising number of calories for her to gain weight. The dietician initially said 2000 calories but she did not gain on that. We upped to 2400 calories and then over time, she started gaining. It did take a while.

This summer she had to be on EEN - no food at all - due to another gastrointestinal issue (motility related) and it was SO hard. She was on just formula for 16 weeks. She was allowed broth but nothing else really. Distraction during meal times helped and we tried to cook outside on the grill as much as possible, so the house did not smell of food. It was still very hard. It might be worth asking his GI if he can do 90% EN and 10% food - a little food makes EN more tolerable, though it is still hard.

I would tell his GI about the headache and stomach aches. It is very possible he needs more calories. The stomach pain could be IBD related obviously and that will hopefully go away once he's had a few more infusions. My daughter saw some improvement after two infusions of Remicade, but didn't feel good till she had 4 infusions, I think. We also needed to up the dose of Remicade before she responded. And we increased the frequency to every 4-5 weeks, once maintenance doses started (after the first 3 infusions and loading dose). Scopes about 8-9 months later showed a perfect colon - no ulcers or inflammation. She did still have miild inflammation in her small bowel, but it was much better than the scope at diagnosis.

Hang in there. My daughter was diagnosed with Crohn's at 16 too, 7 (almost 8) years ago.

 

[KTas]

Thank you for sharing! I’m hopeful...he has ups and downs but on the whole doing better.

My son was diagnosed at 16 years also, he's now 26 and has been in remission for years.

He has never used steroids but EEN was used to induce remission. He went 6 weeks with no food. The treatment helped him a lot!! But, although he had lost approx. 25 lbs prior to dx, he didn't gain tons during the 6 weeks of EEN (I believe 6-10 lbs) but the weight started to come back quickly after the six weeks. At this point, he'd continued with partial EN plus his regular diet (starting with a reintro diet).

While on the six weeks of EEN, he was taking in 3000 cal/day. At that time, he was 5'10" and 120 lbs.

It is hard to have no food! He was allowed to have clear fluids along with his shake - he would often have a bowl of broth (chicken, beef, veg, a mix of two) and it 'tasted' like real food. He was also allowed jello, freezies, popsicles (no chocolate), etc. But it was the broth that was the most satisfying, even if it didn't take away hunger. He would take broth in a thermos to school so he could eat lunch with his friends and I arranged for the school to keep freezies for him as well.

He's been on remicade for years now and his crohns has been under control. Getting into remission through EEN and remicade has allowed him to finish high school, finish university, travel with friends, begin his career, date, etc.

Good luck!!